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I have reoccurrence Nets side effects of cap/tem

Posted by djchambers @djchambers, 2 days ago

I have reoccurrence of two tumors, one in liver and one near small intestine, site of previous surgery. I’m currently in third round of cap/temo. Last cap/temo at about nine days I had severe pain in my chest. I was directed to go to the emergency room. After numerous tests they said it was Gerd and possibly esophagitis. I’ve now taken nine doses of cap and had the same experience.
Nurse practitioner said it might be caused by the tumor rather than chemo. I’m on three different meds for acid, Protonix, Pepcid, and prevacid. I’m also on a restricted diet of no gluten (celiac) dairy, coffee, chocolate citrus, tomatoes, and anything else that might cause stomach upset.

Anyone else have experience with this type of acute guard/indigestion while on Him or from neuroendocrine tumor?

Interested in more discussions like this? Go to the Neuroendocrine Tumors (NETs) Support Group.

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knelson626 | @knelson626 | 1 day ago

I lasted 9 days on my first round of CAP-TEM (never even started the TEM) and was told to stop due to multiple bouts daily of vomiting and diarrhea. I have been off it for 9 days and am not vomiting, but still struggle with nausea. My doctor is testing me for a genetic mutation that affects the way my body metabolizes the CAP causing it to accumulate in my body. If I have the mutation I can still do the therapy, but they will adjust the dose.

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